I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Monday, September 9, 2013

The ribbon, this month, is gold

September is pediatric cancer awareness month.

Didn't know? Don't feel bad. I have two kids who have had 3 cancers between them, and I didn't know. But then again, I am aware of pediatric cancer every day. I don't need to set aside the thirty days in September to think about it. We live with pediatric cancer like some hideous knickknack that we cannot ever part with. I am grateful for the opportunity for this monstrosity to collect dust over the next 6 weeks, whereupon I hope to put it back on the shelf until after Christmas. Very, very grateful.

But, as many of my friends either anticipate (or dread) the pulling out of the pink ribbons next month, this month's color is yellow. (Didn't know that either? No worries!) Dan made a fabulous banner on his facebook page, one that I only barely possess the technological wherewithal to steal. But I did-so, take that technology!

Hollywood and our One Hip Wonder...

Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience. We absolutely never say the phrase "What are the odds?" in this house. With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires.

However, there are some things that statistics can help illuminate. Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.

While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers. Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids. They get the 'hand me down drugs' of the adult cancer world. In 20 years, only one drug has been developed for kids with cancer.

I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit. Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances. Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs. I am not at all interested in more kids getting cancer. Naturally.

But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer. Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country. Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group. The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.

I was asked by a friend about how to best support pediatric cancer. There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research. These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.

If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)

If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself. (I like to think of them as the 'mutual fund' of pediatric research.) Here are a few:

We are personally associated with the sister charities Flashes of Hope and Kick It. Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland. Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause. This year, our family's story will be featured at the event, in an effort to raise some more research dollars.

Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game. It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May. This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name. Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds. We are so grateful for those dollars being directed in such a personally meaningful way.

The CDC lists cancer as the 2nd leading cause of death of children, after accidents. We are hoping to push that way down the list. No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out. We are working on helping to secure the resources for those bright minds, right now.

Any help you would like to offer would be appreciated.

Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.